MRI day again. We were on the afternoon list which meant we had to be in D.O.S.A (Day of surgery admissions) for 11am, and nothing to eat or drink for Alex after 7.30. The afternoon list starts at 1pm, and since we were second on the list I expected Alex to go in around 2.30. The first inkling I had that it might be later than that was when the nurse doing his obs (weight, height, O2 sats and BP) at 12.30 asked if Alex wanted to have something to drink. It is important to have fasted for at least 2 hours prior to any anaesthesia to reduce the risk of vomiting and pulmonary aspiration during intubation, so if at 12.30 they were asking if he wanted a drink it was a sure sign they were running at least an hour late.
It turned out that there had been an emergency case which needed an MRI so everyone else got bumped back. We have previously been that emergency, so despite the protests of my stomach I was happy to wait. Better to be bored in D.O.S.A than to be the emergency in radiology.
So we waited and we waited. Did some paperwork. Waited some more. Then we were the last people in D.O.S.A.
At 4pm the nurses took us down to the waiting room in radiology – not becuase they were ready for us, but because they wanted to shut D.O.S.A. Alex was incredibly patient, and apart from asking every 10 minutes or so if it was time to smell the colours, waited quietly. One of the sliver linings to his not really wanting to eat much is that on days when he needs to fast, going without food isn’t a huge problem.
Finally at ten to five it was Alex’s turn, we sang the rainbow song, he smelled the colours, then at ten past five I got some lunch. Full head and spine MRI’s take somewhere in the vicinity of 90 minutes, and you have to stay in recovery for at least an hour, so Alex and I made it home at about 8 o’clock. A long day, but done. Now we just had to wait for the results. The MRI was done on a Wednesday so we thought we’d get a phone call with the results maybe Friday, but more likely on Monday. By Tuesday lunchtime Phil stopped waiting for a call and rang Alex’s oncologist Dr Ram. Phil asked about the results and Dr Ram’s response was “What results?”. Ususally Dr Ram makes the appointments for the MRI’s, it’s a tricky juggling act since the hospital only has one machine and it is unfortunately in high demand. So when I got a phone call from radiology saying they had a cancellation and did I want it for Alex I said yes straight away. I had assumed that since Alex was Dr Ram’s patient, he would have been informed. Apparently not it would seem.
We also assumed that since Alex was Dr Ram’s patient that he would have been notified when the scan results were done.
Again, apparently not.
Ram checked the system and found the results – no change.
No change. The two sweetest words in the english language as far as we are concerned. Better even than “no significant change” since that result can, as we have seen, sneak up on you and change into “we have a problem” with surprising swiftness.
No change. Tears of joy. Waves of relief. A deep breath and the realisation that Alex’s 6th birthday party was only 5 days away and I still had a LOT to do.
Organising party games when some of your target audience can see and some can’t presents some interesting problems. Initially levelling the playing field is easy enough – blindfolds for all the sighted players. Adapting the games to then be played with no vision was the tricky part!
First – find the skittle, one skittle in a bowl of smarties, one bowl per player so chocolate for everyone!
Then pass the parcel which was wrapped in alternating layers of newspaper and chux cleaning cloths to make it easier to distinguish between layers, then finding lego blocks, with masking tape dots on one side to form numbers in braille, hidden in a big box of lego.
We held the party at the Surry Downs community center which has a lovely enclosed play area attached to the party room, so some free play and food, a few party games then a caterpillar birthday cake and happy birthday sung very quietly – because Alex doesn’t like the loud singing that usually happens at a birthday party – ate up 2 hours surprisingly quickly.
A big thankyou to everyone who came, and those who helped with the prep and clean up. We were and are so happy that you were able to share a day with us that until relatively recently we were told not to count on seeing.
The next big challenge for Alex will be school camp. 3 days and 2 nights with the rest of his school down at Victor Harbour. It will be in interesting few days for him (and his teachers!) but we are practicing packing his bags and packing and unpacking his sleeping bag, and I think he’ll have a blast.
We’ll let you know 🙂
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